Disability and Technology

ALAN ROULSTONE

DISABILITY &

TECHNOLOGY

An Interdisciplinary and

International Approach

Disability and Technology

Alan   Roulstone

Disability and

Technology

An Interdisciplinary and International Approach

ISBN 978-1-137-45041-8 ISBN 978-1-137-45042-5 (eBook)

DOI 10.1057/978-1-137-45042-5

Library of Congress Control Number: 2016938694

© Th e Editor(s) (if applicable) and Th e Author(s) 2016

Th e author(s) has/have asserted their right(s) to be identifi ed as the author(s) of this work in accordance

with the Copyright, Design and Patents Act 1988.

Th is work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether

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dissimilar methodology now known or hereafter developed.

Th e use of general descriptive names, registered names, trademarks, service marks, etc. in this publication

does not imply, even in the absence of a specifi c statement, that such names are exempt from the relevant

protective laws and regulations and therefore free for general use.

Th e publisher, the authors and the editors are safe to assume that the advice and information in this book

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Printed on acid-free paper

Th is Palgrave Macmillan imprint is published by Springer Nature

Th e registered company is Macmillan Publishers Ltd. London

Alan   Roulstone

School of Sociology and Social Policy

University of Leeds

United Kingdom

v

Th anks are due to Philippa Grand, head of social science publishing

at Palgrave Macmillan, for commissioning and supporting this book.

Gratitude is also extended to Dominic Walker, editorial assistant, for his

faith in the book as a project. I am very grateful to Jennifer Harris and

Nick Watson for their formative insights into the venture and allowing

me to tap into their wealth of insights in this area.

Sapientia Sola Libertas Est.

Acknowledgements

vii

1 An Introduction and Overview 1

Part I Disability and Technology in Context 43

2 Between Bodies, Artefacts and Th eories: Th eorising

Disability, Th eorising Technology 45

3 I’m Not Sure We’ve Been Introduced: Disability Meets

Technology 87

Part II Understanding Disability, Understanding

Technology 123

4 Employing Technology to Good Eff ect: Technology,

Disability and the ‘Palace’ of Paid Work 125

5 Disability, Ageing and Technology: Th ey Th ink that

Th rowing a Pendant Alarm at You Equals

Independence 153

Contents

viii Contents

6 Th e Wheelchair: Enabled or Disabled? Houston,

We’ve Had a Problem 181

7 To Augment or Not to Augment? Th at is the Question 207

Final Refl ection 237

Bibliography 239

Index 243

ix

ADA Americans with Disabilities Act 1990

ADL Anti Discrimination Legislation

ANT Actor Network Th eory

ASL American Sign Language

AT Assistive Technology

CCTV Closed-Circuit Television

CI Cochlear Implant

CRPD Convention on the Rights of People with Disabilities

DDA Disability Discrimination Act 1995

DDAA Disability Discrimination Amendment Act 2005

DRC Disability Rights Commission

EA Equality Act 2010

EC European Commission

EPIOC Electrically Powered Hybrid Indoor–Outdoor Wheelchairs

DH Department of Health

DO-IT Disabilities, Opportunities, Internetworking and Technology

DRC Disability Rights Commission

DTI Department of Trade and Industry

EPW Electric Powered Wheelchairs

FDRA Federal Defi cit Reduction Act 2005

GPS Global Positioning System

GSM Global System Mobile

HTC Health Technology Cooperative

Abbreviations

x Abbreviations

ICSC International Conference on Spatial Cognition

ICT Information and Communication Technology

IT Information Technology

IVF In Vitro Fertilisation

JRRD Journal of Rehabilitation Research and Development

MCS Minimally Conscious State

NAD National Association of the Deaf

NHS National Health Service

ODPM Offi ce of the Deputy Prime Minister

PVS Persistent Vegetative State

PWD People with Disabilities

RfID Radio frequency Identifi cation Devices

STS Science and Technology Studies

TD Technological Determinism

W3C World Wide Web Consortium

WCAG Web Content Accessibility Guidance

WHO World Health Organization

WSDAN Whole System Demonstrators Action Network

© Th e Editor(s) (if applicable) and Th e Author(s) 2016 1

A. Roulstone, Disability and Technology,

DOI 10.1057/978-1-137-45042-5_1

1

An Introduction and Overview

Th e question of technology and disability has provoked an array of

academic and clinical work which, although disparate, shares the objective

of enhancing social or bodily function. Although diverse models of

disability attempt to locate the role technology plays in disabled people’s

lives, historically concern has been directed towards enhancing the human

condition or to be more precise to address the function of technology in

relation to facilitating what Nussbaum calls capabilities (Nussbaum 2011 ).

Of course, extreme technocentric constructions can both misread the

benefi ts of technology and also off er misplaced hope as to the potential of

technology. Th is is evident in recent discussions of ‘cure’ in spinal injury via

stem cell therapy, exoskeletal shells and thought-activated prostheses (Breen

2015 ; Marchal-Crespo and Reinkensmeyer 2009 ). Th ese approaches, in

say clinical rehabilitation or engineering, focus on ‘high-tech’ interven￾tions, often for those with the most signifi cant impairments. At the oppo￾site extreme are social-determinist views, which assert that technology can

play only a small part in helping to produce an enabling society (Oliver

1990 ; Zola 1989 ). Both views distract attention from the myriad ways in

which  technology (low/high, cheap/expensive, tangible/virtual) can aid

choices in daily living and independence for disabled people. It is clear

2 Disability and Technology

that technological ‘gold standards’, both of technologies themselves and

their wider techno-social support systems, may simply miscomprehend the

gains technology aff ords for many disabled people. However, we do need to

be cautious about the claims made of technology, of its ability to improve

the lives of disabled people. Industry, professional and early adopter enthu￾siasm may detract from the limits of a given technology (Hannukainen

and Hölttä-Otto 2006 ). Why else is so much technology not used or

under-used?

Ergonomically designed aids to daily living such as well-designed cutlery,

door furniture and screw tops may have as much impact on independence

and control for some (Renda and Kuys 2013 ) as sophisticated global posi￾tioning systems (GPS) or infra-red tracking systems do in aiding others

(Helal et al. 2001 ). Much social science writing on disability and technol￾ogy is theoretically intense but is often lacking in empirical support: it is

unusual for much of the research to be upfront about the research methods

used in the studies they are evaluating. Meanwhile, clinical and rehabilita￾tion studies may provide rich detail of the methods adopted but are often

unaware of or fail to mention their epistemological standpoint and whether

their research question can be viewed in a diff erent way. Many theories

and writings assume that the only requisite focus is on studies of the same

type; so that sociological studies tend to cite other such studies, while clini￾cal studies may draw down only those studies in their own image, even if

they come to very diff erent conclusions. When I began the book Enabling

Technology back in the mid-1990s, the key reference points were the UK;

looking back, insuffi cient attention was given to the diversity of models

and narratives available in the literature (Roulstone 1998 ). Many studies

are context blind and do not aim to account for international or country￾specifi c factors, such as the mix of market and state, demographic speci￾fi cities and cultural responses to technology and disability. For example,

attitudes to disability in Malta, a small-sized but largely Catholic coun￾try with close-knit socio-cultural systems, may be very diff erent from say

a large, universalistic and technologically advanced nation like Germany.

In these very diff erent contexts, how might attitudes to say exoskeletons,

texting and telecare vary?

Th e only way then to understand and provide a complex model of dis￾ability and technology is to seek international evidence, to acknowledge

1 An Introduction and Overview 3

diverse social and cultural contexts, to register disabled people’s

perceptions and experience (Chaves et al. 2004 ) and to factor in age, gen￾eration, gender, impairment and locality wherever possible. Th e increas￾ing marketisation of technology, aids and equipment also requires a

greater understanding of the interplay between ‘need’, market-imperative

and the just allocation of technologies to provide assistance (Stone 1984 ).

Markets have the potential to foster false needs (Herbert 1964 ) of course,

but also to be more responsive than say centralised state bureaucracies:

much of the available literature points to insuffi cient access and supply

in both market and state welfare contexts of say power chairs but for very

diff erent reasons. Th e recent retraction of welfare settlements across the

northern hemisphere and the advent of a recommodifi ed state (Morel

et al. 2012 ) require renewed attention in terms of what these produce and

how they match social need (Doyal and Gough 1991 ). Only by compre￾hending the above mix of variables can technology, enablement and the

social gains and disbenefi ts of technology be fully understood.

One thing that is a leitmotif in this book is the paradoxical nature of

technology: its simultaneous ability to open up but also to limit oppor￾tunities, access and inclusion. Th e fragmentary nature of the study of

disability and technology to date has arguably not synthesised the fullest

implications of this paradox. Somewhere between technological deter￾minism (Ellul 1954a,b ) and a full-blown theory of personal agency

(Lasén and Casado 2012 ) to shape technology is the critical realisation

that technologies and disabled people intersect in often unpredictable

ways. Planned activity-design, implementation, procurement and use

may easily produce negative unintended consequences (Hughes et  al.

2001 ), while the benefi ts of technology in opening up environments,

access and inclusion may be the ‘result’ of unplanned or even remote

technological developments, for example with texting for d/Deaf people

(Okuyama and Iwai 2011 ; Power and Power 2004 ). Serendipity and its

obverse have been important factors in shaping the benefi ts and limits of

technology for disabled people (O’Donoghue 2013 ) which clearly need

unpacking further. We need to understand the direct benefi ts of technol￾ogy for disabled people, for example those that come with many hand￾held technologies, as well as the indirect benefi ts, as a ‘means to an end’

in helping them achieve social goals. Although engendering frustration

4 Disability and Technology

in some writers, it is this unpredictability of technology, disability and

society, and their intersection, that makes this a rich and nuanced fi eld

of study. Technologies do not emerge without human preconceptions

of need and functional benefi t. In this sense, technologies represent the

wider constructions, zeitgeist and social imagination as much as they

represent tangible artefacts (Mackenzie 1999 ; Roulstone 1998 ; Williams

and Edge 1992 ; Winner 1986 ). Technologies have the power to enable,

yet also disable, to foster greater control and surveillance, and conceivably

to embody the very symbol of alienation for disabled people. Technology,

although aimed at aiding disabled people, has often been designed and

procured by non-disabled people.

Th e question of the scope and role of technologies, their enabling

potential for disabled people’s access and inclusion, is now well recog￾nised (Harris 2010a,b ; Woods and Watson 2003 ). Writers and research￾ers also point to the limits or misuse of such technologies, that they can

be disabling and close off options for disabled people. A good example

of this tension between enabling and disabling surrounds new complex

technological interventions that make possible more precise pre-birth

diagnoses of disabled babies (Asch 1999 ; Saxton 2000 ) yet also present

new moral and ethical dilemmas that did not previously exist. Further,

even relatively straightforward technologies, ones often overlooked in

technology studies, such as wheelchair design and access, aff ord new pos￾sibilities, but which at the same time also present new avenues for exclu￾sion, especially if those technologies become over-engineered and too

costly (Harris 2010a,b ). While the design of wheelchairs, for example,

becomes more user-centred, their availability, especially of power chairs,

is increasingly problematic in the context of austerity, even in the histori￾cally better resourced northern hemisphere (Eggers et al. 2009 ; Staincliff e

2003 ). Some disabled people are refused access to wheelchairs due to

medical conceptions which connect certain impairments with ‘wheelchair

need’ and not others, while the ‘need’ for technology is often conceived

as either total or absent. Th is is especially true in biomedical systems that

often fail to, or are not allowed to, understand the complex relationship

between technology and disabled lives. A good example of this is that

non-disabled thinking on cars, bikes and public transport technologies

would not conceive these needs in a binary need/does not need manner.